Referral to Mayo for Autoimmune or Unknown Condition
I've posted in this thread a few times, as my wife has been very and increasingly ill for 12 years. Her disease is debilitating, and like many of you in this group, she's been labelled an attention seeker, a chronic complainer, etc., etc., etc. I am not certain that her illness is autoimmune, but I suspect it very strongly. Her symptoms are widespread (intestinal, epidermal, muscular/skeletal, and on and on). Recently, her family doctor in Canada, where we live, made a referral to Mayo which was highly detailed, chronicling her complicated medical history, progression of symptoms, and the day to day grim reality of this progressively treacherous disease. To our utter shock and disappointment, we received word today that the referral had passed through internal medicine, down to gastroenterology, and was, with regret, not accepted. According to the letter, they felt there was nothing to be done. I can't say how disheartening this news is. A young and vibrant person that I love is ill and suffering desperately.
Our doctor has promised to write a strident letter of appeal. I called the international appointments office today, and the representative I spoke with said that she would be sure to resubmit our application, and advised that we wait until the doctor's appeal is received also, so that that can be reviewed along with the referral. I am anxious to hear if anyone has a similar experience of at first being denied an appointment, and through contestation eventually received one. I fear that our window of opportunity to receive meaningful treatment is shrinking.
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@keithwalker This is an excellent response and you are a wonderful dad! The National Institute of Health is also a great resource for medical literature that helped me by explaining my symptoms for a spine problem that my doctors were missing. That is how I came to Mayo after surgical intervention was refused to me by several local surgeons. I am so glad that you advocated for your daughter and you can share how you did this. I was wondering if there was any possibility of some kind of toxicity or exposure to something that is triggering autoimmunity, and if that was something that was considered? For example, it could be environmental chemicals or something like a reaction to dental restoration materials if that applies to her situation.
I have an autoimmune thyroid condition that my environmental medicine doctor believes was caused by exposure to mercury from old dental amalgam filings that had been in my mouth for 40+ years that were previously presumed to be safe. It was only after they were removed that my blood work could detect the antibody levels against my thyroid and they were much lower; prior to this, the levels were off the charts and could not be read. The doctor who pioneered the field of environmental medicine started the Environmental Health Center in Dallas and published some detailed volumes for doctors that can be purchased about the biochemistry of how the body functions and detoxes as well as how electromagnetic fields affect this. They see patients with chemical sensitivities. I also see a biological dentist who uses safer materials and because I also have old root canals that are causing problems, I am discussing this with my dentist. The material used to plug a tooth in a root canal contains cadmium, a heavy metal and over time that can leak from the tooth with the bacterial infection and this is the dilemma that I'm facing now because of trauma to my teeth when I was a kid. Mainstream medicine and dentistry may not be looking at environmental factors, but it is possible to have a reaction to something foreign that is stored in body tissues and triggers an autoimmune attack.
You may also be interested in a book from an author who recovered from an autoimmune problem. Here are links both.
Environmental Health Center Dallas https://www.ehcd.com/
The Autoimmune Epidemic https://donnajacksonnakazawa.com/autoimmune-epidemic/
My dentist discussed the work of Dietrich Klinghardt M.D., Ph.D with me because of a new metal free dental implant that he helped develop and I found this on the website. It explains some issues of detoxing from metals and how metals interfere. I found it interesting, but anyone engaging in a metal detox regimen should do this under a doctor's supervision because the patient is exposed to the toxins again when they are pulled out of the tissues unless there is a pathway to elimination from the body.
https://klinghardtinstitute.com/wp-content/uploads/2016/01/Explore-Neurotoxin-protocol.pdf
Keep searching and thinking outside the box. You might find the cause.
Jennifer
Yes, environmental factors are an important consideration when trying to discover the root cause of autoimmunity. Our bodies possess a toxic load capacity and once it exceeds that limit, both physical and mental issues can ensue. Another thing to consider is trauma, both physical and emotional trauma—surgeries, loss of loved ones especially caretakers, car accidents, divorce including parental divorces. One of the leading experts on trauma Bessel van der Kolk, MD has an excellent book on this, The Body Keeps Score.
We don’t just become ill and our genes don’t make us sick. Rather, certain generic expressions are triggered by our environmental exposure, physical and emotional.
Thank you for the response and the insightful information. Godspeed to you and have a wonderful Thanksgiving! Despite all of our adversity, we do have a lot to be thankful for.
Keith, you are correct…there is much for which to be grateful. Blessings to you and your family; may you have a beautiful Thanksgiving and holiday.
@keithwalker You are most welcome. Adversity is tough, but it teaches us how to be better, and I am thankful for it. It made me who I am today, and I'm able to be here to share what I have learned. I wish you and your daughter continuing insight to find solutions. God bless!
wow, never heard of a denial. It is the insurance?
Nope. I’ve learned it’s quite common.
mayo clinic has changed a lot since 2010 and treatment for illness have changed. I have fibromyalgia and had a stroke. I am dealing with a kidney stone now with a super fibromyalgia flare up. My local doctors canceled kidney stone surgery because of my short of breath, heart palpation, and stroke history. The fibromyalgia support is you will always have flare ups. Returned to mayo but my general Internal doctor is in another dept and I was assigned a N.P. We don't get along and I have asked to change but was told have to wait one year. WHY? I was taught not everyone gets along and can talk to everyone. So WHY do I need to wait one year for stone to get bigger, more stress, more pain, and more diculities with surgery later. How do I get better help now?
I joined this group to see if the mayo clinic could help me, by what I'm seeing the answers is probably not. On my own reserch I've ran across alot of information, when I see kidney stones fibromyalgia and your other symptoms I think high oxalate, not sure if this will help but look up Susan Owens trying low oxalate diet online plus she's got a ton of information in her files on this I do believe she use to be a resercher for NIH.
Thank You. Godspeed,
@leslon, you might consider contacting the Office of Patient Experience to share about your experience with the NP. Here is more information: https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Thank you. I have been to that office and that is where I was told have to have who I was given (NP) for one year. This can go on and on.